As a former medical / biological researcher for most of my career before I retired a few years ago, I am lucky to still have access to ( and be able to understand) medical and research publications. I have passed on a number of recent papers to my GP and to my Rheumatology consultant (- very humbly, because it’s not good to appear to be a “ know-it-all”) and I’ve been surprised that they were not aware of much current research- I guess they don’t have the time!
One line of research that particularly caught my interest was indicating the role of Shingles virus in triggering GCA, which looked at temporal artery biopsy samples and found evidence of Shingles virus in 74% of samples- significant! I can send people links to the research if anyone is interested?
Still not sure that my diagnosis was correct ( in June 2017), but if it proves I do have GCA, then in my case, I am sure Shingles was the culprit, and I would like to lobby for Shingles vaccine to be offered in the U.K. much earlier than the current 70 ( which is far too late).
How many other people had an attack of Shingles before getting GCA I wonder?
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Suzita76
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I had Shingles twice and both times in the right side of the head over the eye. First time was about four years ago, second time approx 12 months prior to being diagnosed with GCA.
I think there a link somewhere. The pain in right side of the head was in fact very similar to the pain I had with GCA, (although the GCA pain was much more severe); which was why at first I thought I had Shingles for the third time.
Funnily enough, the GCA pain was a lot worse on the right side of my head than the left.
I've never had shingles as far as I know, unless it was an uncommonly mild bout that was never diagnosed and, from what I know about shingles, that is extremely unlikely. My GCA seemingly came out of the blue, but I had been feeling anxious and depressed about various matters for a while, accompanied by general feelings of unwellness and fatigue - both of which got much worse once the GCA and PMR really took hold.
There are a lot of weaknesses in that research - and it hadn't been confirmed by any other groups when I read it. As I'm sure you are very well aware correlation is not causation! However - one of the listed adverse effects of the first shingles vaccine is PMR. But I'd also suggest it perhaps isn't the SHINGLES vaccine that is important but the chicken pox vaccine in childhood. If that is a link then the incidence of PMR/GCA should fall dramatically as the generation who have had CP vaccine get old.
I imagine almost all of us of this age had chicken pox as children and it is common for the virus to become dormant in various nerve endings in the body which in some people then wake up at come later date and cause shingles. No doubt it is dormant in other areas too. Having shingles is probably a sign of an immune system that is deranged in some way - and possibly an attack of shingles shortly before PMR or GCA develops is due to the underlying autoimmune cause of the vasculitis?
And for the record, I had CP as a child but have not yet developed shingles.
PMRpro - I was thinking of asking for shingles vaccination, and indeed paying for it (as I am a tad young to get on NHS) but having read all this thread I'm wondering whether I should leave well alone now! Having had recurring shingles since late 20's and sitting here today with blisters on arm that have decided to join up into one huge painful blister I'm in a quandary. What would your advice be? Thanks in advance (I know you can't tell me what to do but I do value your input).
I'm on the anti virals. Thanks for prompt response. I have a check up this week (a reward from NHS for being 60) so I will ask the nurse in the first instance. Cheers.
Here is an article that addresses a microbial association with GCA. Their research could not find a statistical difference between GCA tissue and the control group. That doesn’t mean it’s not there, more research is definitely needed.
Research needs grant money and that is another topic.
Yep I had eye shingles a few years ago and have never felt right since. Haven’t got GCA but diagnosed with PMR 12 months ago so I am absolutely certain that shingles was the start of all this ☹️
And then there is this. A woman successfully treated for GCA with antivirals. What a shame if it is this simple to treat and we have all been languishing in the grip of prednisone for years. I read about this in the beginning and asked for antivirals and was refused.
Personally I wouldn’t want a live vaccination anywhere near a body that has a tendency to attack itself due to confusion as to what is self and what is enemy. Interestingly over the years I’ve always acutely overreacted to all vaccines, even killed ones. I put mine down to decades of one stressful event after the other, chemo that caused a lot of inflammation in my circulatory system in 2004 and possibly one attack of Herpes simplex virus after the other. The latter may have just been triggered by the former issues.
I can confirm that my GCA (positive biopsy) followed almost immediately after shingles. I thought it was a post shingles body reaction at first! With ear,tooth,jaw & head, ache. Plus a sore throat & general body ache.
4 months prior to the shingles attack I had completed 30 weeks chemo. (5Fu) after an operation for colon cancer.
I reckon my immune system was hammered! Combined with family deaths it had too much stress to bear.
Not me - never had a shingles vax and have GCA - like DL my PMR - which came first followed by GCA followed some years of emotional stress and an injury (not extreme) to my leg. I also had a very bad flu or similar virus a couple of years before what were probably my first symptoms. My mother also had GCA (never diagnosed at the time) and also never had shingles or the vax.
this is interesting because I had the symptoms of GCA directly after my vaccine, followed by shingles a couple of weeks later. Aciclovir ?sp? a day after rash was photographed and sent to my GP. I recovered quite quickly from shingles but GCA affected me for months.
I do remember reading some research when I was first diagnosed with GCA in 2017 (and being a scientist, wanting to find out as much as possible!) in which Shingles virus was identified (by antibody tests) in the attacked artery walls of over 74% of patients diagnosed with GCA/ arteritis ( might even have been post-mortem). I think PMRPro was sceptical of this research- I can only talk for me. My initial bout of GCA followed a Shingles infection, as did a relapse a year later. I have now had the non-live Shingles vaccine (Shingrix), which we can now ask for in the uk ( thanks to this forum for spreading the word on this!). I must look up the research (but not today, having yesterday spent nearly 6 hours in A and E with atrial fibrillation. Just when I was feeling really well too!. (Must say though, all the A and E people - doctors, nurses, admin. staff were brilliant, though the £9 charge for parking was outrageous). Many autoimmune diseases are known to be triggered by bacterial or viral infections (systemic lupus, MS, RA to name just a few). Here are some interesting links for anyone interested
Severe Strep throat (in my case, caused by Streptococcus pyogenes 42 years ago, triggered in me a very distressing condition the medics termed Guttate Psoriasis. Most of my skin came off and I looked like I’d been doused in boiling water (but I recovered over 7 months, and it has never recurred, though I still have one very red cheek). I was not greatly comforted by the consultant who told me to count myself lucky as Strep. can also trigger Rheumatic fever, kidney damage etc. instead of mere skin damage! (I did also suffered kidney damage). healthline.com/health/post-...
wow that’s fascinating to me and also educational as I’ve never had the shingles vax but my Doc presses me every year. Lyme Disease started my autoimmune and it wasn’t spotted till my heart was involved. Thank you. My Doc is astute but they don’t have time to read all of the research unlike us who are stuck indoors for long hours during flares. Thank you!
It is only one study - and the virus that causes shingles is the same virus that causes chicken pox. In CP it is active and causes a systemic infection. Some of the virus remains in the body at the end of the illness and then hibernates in the central nervous system. To cause shingles, something, and it isn't clear what, triggers the immune system to allow the virus to come out of hibernation and it migrates to specific peripheral nerves and the symptoms we call shingles appear. Almost all people have the virus in their bodies so it isn't possible to say it in particular triggers GCA. Correlation does not prove causation - it might, but it can't be proved.
I've had CP, I haven't had GCA and I haven't had either shingles or the shingles jab as in the UK i wasn't old enough to qualify.
As you say, the Chickenpox/Shingles virus (alias VZV or Varicella zoster virus) hides in nervous tissue, BUT, as the article says, (quote) "in rare cases, shingles can affect other organs. This leads to more serious complications that can be life threatening.
In the brain, it can cause encephalitis. In the liver, it can cause hepatitis AND for people with internal shingles, a rare complication is VZV vasculopathy, or a viral infection of the arteries. If not treated properly, this can lead to a heart attack or stroke".
(Having now had 2 doses of the Shingrix (non-live Shingles vaccine), thanks entirely to information on this forum, I am hopeful of not getting Shingles again!).
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Is varicella zoster (herpes zoster, shingles?) perhaps a partial cause of some PMR, GCA? Does it fit for you?
History of PMR/GCA?
